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“Don’t Forget Me!” The Importance of Sibling Support

Rachel’s face lights up anytime she talks about Josh, her younger brother with autism. “He’s so funny,” she says. “He goes around the house making sure all the lights are turned off – even when we’re still in the room.” When Rachel is feeling down, Josh is quick to cheer her up with a dog video, or a spot-on recitation of a local TV ad. Though Rachel acknowledges that Josh’s needs sometimes create extra work for her parents, she feels that she learns every day from Josh’s perseverance and the pleasure he takes in simple things. “I wouldn’t want him to be anyone other than who he is,” she says.

Dylan’s experience has been different. His big brother James was his favorite playmate when he was little. “Dylan was the best gift we could ever have given James,“ says the boys’ mom. “He taught James how to play, and he would do anything to make him laugh.” But as time went by, Dylan began to surpass James – in academics, in social skills, in self-care – and it became increasingly difficult for the boys to find common ground. “Dylan was ready to move on to ‘big kid’ interests,” says their mom, “while James was still content to watch cartoons.” As James grew older, he developed aggressive behaviors and sometimes had meltdowns in public, creating enormous stress for the whole family. Dylan couldn’t help but feel angry, resentful, and disconnected from his brother.

Siblings of people with autism may not share their brothers’ or sisters’ social or cognitive challenges, yet in many ways, they have special needs of their own. As with other family members, the realization that a sibling has a disability can trigger feelings of grief, sadness, guilt, or fear. Young children may worry that they did something to cause their sibling’s autism – or that they might become autistic themselves. Older children may feel fiercely protective of their sibling – or embarrassed when unusual behaviors erupt in public places. Siblings may experience anger if they, or their parents, become targets of unsafe behavior. Some siblings may feel pressure to be “the easy one,” sensing that their parents already have too much to handle. Others may misbehave in an effort to gain their fair share of the family’s attention.

Of all the family members touched by ASD, siblings will have the longest relationship with an affected brother or sister across the lifespan. Many anticipate caregiving for their siblings after parents grow elderly or pass away. This responsibility can significantly impact a sibling’s own plans for the future. It is natural for siblings to alternate between feelings of pride and resentment about the critical role they play.

Here are some tips to support the emotional well-being of siblings of all ages:

  • “Autism” is not a dirty word. When we talk openly about a loved one’s spectrum disorder, we send the message that there is nothing shameful about having a disability. Both children with autism and their siblings benefit from conversations about what autism means; the challenges that come with ASD; and the special abilities that can also accompany the diagnosis. Explain to younger children that autism is a lifelong disability that is part of a person from the time they are born. They may need reassurance that they did not cause a sibling’s autism, and that ASD is not something they will “catch” or develop out of the blue. As children get older, welcome them to ask questions – even those that are uncomfortable – to help them understand their brother’s or sister’s behavior, and what interventions are in place to address challenges.
  • Set aside special time just for sibs. The care of a child with autism is sometimes stressful and demanding. Overwhelmed parents may not realize how much of their time and energy is devoted to their child with special needs, at the expense of other kids in the family. There may be places or activities that are beloved by a neurotypical child, but intolerable to their brother or sister with autism. Setting aside one-on-one time with siblings to do things they enjoy builds strong bonds and positive self-image. If needed, your local Autism Resource Specialist may be able to connect you with options for respite care so that you can make time for your non-disabled child.
  • It’s OK to be angry. Even the most loving and understanding of siblings will sometimes feel mad, humiliated, or resentful of a brother or sister with special needs. The desire to have a “normal” family that looks like any other is a natural part of child development. So are sibling rivalries and arguments! As parents, we often emphasize the positive in an effort to paint our children with autism in the rosiest light and can feel extra-protective when sibling quarrels flare up. It may seem as though giving your “sib” space to openly vent their frustration will encourage negative feelings, making matters worse. However, these difficult conversations can be great opportunities to educate siblings about why and how autism affects behavior, helping them to build compassion and empathy. Your acknowledgement that life with autism is sometimes difficult – for your child and for you – will help your “sib” to feel supported rather than guilty for their emotions.
  • Make sure others acknowledge your typically-developing child. So often, a child with autism may be the first thing well-meaning friends, teachers, and neighbors ask parents about. Siblings may come to feel less interesting or important to those in the family’s periphery, simply because their interests and activities are more predictable. Young children may wonder why therapists visit their home, offering toys, games, and special attention to their brother or sister. As siblings grow older, they may resent being left out of conversations about their brother’s or sister’s progress, or their plans for the future; after all, their own lives may be impacted by the decisions a sibling’s support team has made! Making sure that siblings receive special acknowledgement by those involved with your family can go a long way toward helping them feel positive about themselves and their role – and so can including them, where appropriate, in conversations about future planning.
  • Find a sibling support program. As the autism community has grown, so have opportunities for brothers and sisters to connect and make friends with others who have “been there.” Just as parents often find that the most meaningful support comes from other families who share similar experiences, children too can benefit tremendously from having a safe space to share their feelings with other siblings. Your Autism Resource Specialist can help you find in-person and/or virtual support programs for your neurotypical child. A quick internet search can also lead you to lots of great books written by and for autism siblings of all ages. Especially helpful is the Sibling Support Project, which offers online and in-person support groups for child, teen, and adult siblings, as well as other family members.

When raised with sensitivity, understanding, and permission to be honest about their feelings, siblings often grow to be powerful advocates – not only for their brothers and sisters, but for everyone in the autism community. Contact your Autism Resource Specialist for more resources and ideas to support the “sibs” in your life.

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